Self-determination and choice in the context of mental health services: qualitative insights from a study of self-directed care

Abstract

Objective:

While quantitative research has begun to establish an evidence base for self-directed care (SDC) in mental health, less is known about how people with serious mental illness experience this care model, especially in relation to choice and decision-making. The purpose of this qualitative study was to examine the extent to which people with serious mental illnesses experienced greater choice as a result of their participation in an SDC intervention, and how their experience of choice was related to the fulfillment of three psychological needs (i.e., competence, autonomy, relatedness) identified by self-determination theory.

Methods:

Participants included 45 adults with serious mental illnesses who participated in an SDC intervention. Participants were administered open-ended questions to capture their subjective experiences of the intervention after two years of participation. Responses were quantized to examine the extent to which participants experienced greater choice. Then, using the constant comparison method and guided by self-determination theory, statements from participants who indicated that they experienced greater choice were independently coded and discussed to consensus.

Results:

The majority of participants indicated that they experienced greater choice as a result of the intervention. Competence, autonomy, and relatedness themes were robustly represented within participants’ responses about their experience of increased choice.

Conclusions:

SDC interventions should address competence, autonomy, and relatedness needs in order to facilitate choices that people with serious mental illnesses make as they work toward achieving their recovery goals.

Introduction

Self-directed care (SDC) has emerged as a promising model for organizing and financing mental health services that is consistent with recovery-oriented and person-centered ethos (1–3). Under this model, people with mental health conditions have the opportunity to select goods and services that support them in achieving their recovery goals, typically with assistance from a support broker and the availability of special funds for making purchases (4). SDC aims to promote empowerment and self-determination, giving people with mental illnesses greater choice and control over traditional and non-traditional services and supports (5) to help them live full and satisfying lives (6).

People with mental health conditions, especially serious mental illnesses, consistently express a desire for greater involvement in decision-making about their care (7). Consequently, advocates of recovery-oriented and person-centered services have encouraged the use of approaches such as shared decision making (8). Shared decision making has become a dominant approach in medical decision-making and increasingly popular in mental health (9–18). Compared with more traditional, paternalistic approaches to medical decision-making (19), shared decision making emphasizes the equal contribution of patients and clinicians (20, 21). Still, shared decision making assumes that clinicians are an essential part of the decision-making process (20). Smith and Williams (22) recently suggested a spectrum of practices to support person-centered care and recovery. Accordingly, shared decision making supports person-centered care, but SDC gives people with mental health conditions ultimate decision-making authority. This self-determinism is seen as closely aligning with the founding principles of psychiatric rehabilitation (23), and is an important yet understudied outcome in intervention research pertinent to serious mental illness.

While quantitative research has begun to establish an evidence base for SDC (3, 24), a recent learning exchange identified a need for qualitative research to further elucidate the value of self-direction from the perspective of key stakeholders (4). To date, qualitative studies have examined participants’ and caregivers’ views regarding the impact of SDC on recovery (25, 26), quality of life (27), and health and well-being (28). To our knowledge, only one qualitative study (29) has highlighted facilitators or barriers to choice and power (e.g., attitudes and values toward SDC and SDC participants, power relations and orientations between participants, service providers, and local authority decision-makers). As this study focused primarily on impediments to choice and power, the present study aimed to further clarify how SDC may facilitate choice according to people with serious mental illnesses using an SDC intervention. Such knowledge is needed to further improve the capacity of SDC and related approaches to maximize empowerment and self-determination.

To better understand the conditions that may facilitate choice in the context of SDC, we used self-determination theory (SDT) (30) as a guiding framework. Specifically, we considered how participants’ experience of choice may be related to three innate psychological needs identified by SDT – competence, autonomy, and relatedness. Competence refers to a feeling of efficacy or capability in attaining desired outcomes, and may be enhanced by helping people access the skills and tools needed to pursue recovery goals. Autonomy is defined by a having a sense of choice and control. Mental health service settings can support autonomy by offering individuals choices and minimizing the degree to which they feel pressured or restricted to choose specific options. Relatedness, operationalized as a feeling of being connected to and understood by others, may be impacted by a therapeutic relationship in which warmth and empathy are conveyed consistently and unconditionally (31). According to SDT, within interpersonal contexts (e.g., mental health interventions/services), fulfillment of each of these needs is a necessary condition for goal pursuit and attainment (32). Thus, addressing each may be central to facilitating choices that people with serious mental illnesses make as they use SDC to work toward achieving their recovery goals.

The purpose of this study was to address two research questions about the experience of choice during an SDC intervention: (A) to what extent do people with serious mental illnesses experience greater choice as a result of the intervention? and (B) does qualitative analysis of statements about choice, elicited through minimally structured open-ended questions, identify competence, autonomy, and relatedness as being connected to increased choice?

Methods

Sample

Qualitative data were collected as part of a randomized controlled trial of SDC for people with serious mental illnesses. Inclusion criteria were: age 18–65 years; receiving Medicaid-reimbursable services in Delaware County, Pennsylvania; diagnosis of schizophrenia spectrum, major depression, or bipolar disorder; cost profile within the 50%−90% band of all Medicaid recipients in the county; no more than two inpatient hospitalizations of 10 days per stay over a two year period prior to study entry; no hospitalization in the six months preceding study entry; and ability to understand SDC requirements and express interest in working with a “recovery coach.” These criteria were used to select participants who were relatively stable with their current services and who could take full advantage of the intervention.

Intervention

The SDC intervention was manualized, and included the assistance of a trained and certified peer specialist (i.e., recovery coach) and the availability of cash funds (i.e., Freedom Funds) that participants could use to purchase nontraditional goods and services. Examples of nontraditional goods and services included gym memberships, household furnishings, and driving lessons/test fees (citation blinded for review). Participants could continue to access previously received services. An initial appointment with the recovery coach was scheduled within a week of randomization. The recovery coach helped participants develop recovery goals and make decisions about how to use services and supports to attain them, submitted Freedom Funds requests to the Medicaid managed care organization, and assisted participants with making and monitoring purchases once requests were approved. Participants determined the frequency and amount of meetings with the recovery coach, but monthly meetings were recommended.

Procedure

The study was approved by the Institutional Review Board of the researchers’ academic institution. Recruitment took place between January 2010 and March 2011. A total of 744 individuals met eligibility criteria based on county records. Researchers contacted eligible individuals to explain the study and assess interest in participation. Of those eligible, 120 were in enrolled after receiving a thorough description of study procedures and providing written informed consent. Reasons for non-enrollment included: not able to be reached (n=229), not able to provide informed consent (n=35), not interested in the study (n=182), interested but not enrolled (n=168), found to be ineligible (n=10). Of those enrolled, 60 were randomized to SDC and 60 to services as usual. The present study utilized data from the SDC group. Of the 60 randomized to SDC, qualitative data were available from 45 participants. Reasons for missing data included: lost to follow-up (n=11), deceased (n=2), and participants did not participate in SDC (n=2).

Measures

Participants receiving SDC were orally administered open-ended questions by a research assistant to capture their experiences of the intervention after two years of participation. For example, participants were asked, “Do you feel like you have more choices about the services you receive for your mental health problems? If yes, why? If no, why?” We did not specifically ask participants about competence, autonomy, or relatedness, which enabled us to assess the degree to which content related to these needs arose spontaneously as participants discussed their experience of choice. Responses to open-ended questions were audio-recorded and transcribed verbatim.

Data Analysis

To address research question A, the number and proportion of “yes” versus “no” responses to the question “Do you feel like you have more choices about the services you receive for your mental health problems?” was calculated.

To address research question B, an integrated approach was used, enabling both inductive (i.e., data-driven) coding of participants’ responses as well as a deductive (i.e., theory-driven) framework to organize codes (33). The first author (ECT) proofread open-ended responses from participants who indicated that they had experienced greater choice due to the intervention, making notes about their experience of choice to facilitate development of an initial draft of coding categories. These categories were reviewed by the two other co-authors (YZI and MS) and revised accordingly. Using the constant comparison method (34) and the preliminary coding guide, responses to open-ended questions were coded independently by the first author and a research assistant; differences in coding were discussed to consensus, which was achieved through iterative refinement of the coding guide. The final coding of open-ended responses was double-checked for accuracy after finalization of the guide. Then, guided by SDT, the interrelationships between codes were discussed among all co-authors to finalize their grouping into themes and subthemes. Data analysis was facilitated using NVivo 12 Plus.

Results

Participant Characteristics

As shown in Table 1, most participants were middle-aged, single, and female. The majority identified as White or Black. Slightly less than half had completed some post-secondary education. Most had affective disorder diagnoses; a smaller percentage had schizophrenia or schizoaffective disorder diagnoses.

Table 1.

Baseline Demographic Characteristics of the Study Sample (N=45)

Variable	N	%
Gender
Men	13	29
Women	32	71
Race/Ethnicitya
White	22	49
Black	19	42
Latino	3	7
Native American	2	4
Asian	1	2
Other	3	7
Education (years)
<12	7	15
12 or GED	17	38
12+	21	47
Marital Status
Single	22	49
Married	3	7
Significant Other but Not Married	13	29
Age (years) (M±SD)	45.48±10.80
Diagnosisb
Major Depressive Disorder	19	42
Bipolar	11	24
Schizoaffective	9	20
Schizophrenia	5	11
Mood Disorder NOS	1	2

^aEthnic categories are not mutually exclusive.

^bDiagnoses according to participants’ self-report.

Research Question A

Most participants in the SDC condition (n=37; 82%) indicated that they experienced greater choice due to the intervention. A minority reported that they did not experience greater choice for the following reasons: could access the same supports and services without SDC (n=1); did not take advantage of SDC (n=1); ideas did not move forward into action (n=1); did not have enough money to access desired services and supports (n=1); was not offered choices (n=1); intervention was not beneficial (n=1); no reason or unclear response given (n=2).

Research Question B

Competence, autonomy, and relatedness themes were robustly represented within participants’ responses about their experience of increased choice. A minority of statements could not be categorized according to these themes and were coded as miscellaneous support. Some participants made statements that were categorized according to multiple themes or subthemes. Themes, subthemes, and example quotations are provided in Table 2 and expanded upon below.

Table 2.

Themes and Subthemes Related to Participants’ Experience of Choice while Participating in SDC

Theme	Subtheme	Description	Example
Competence	Access to financial resources (cash funds)	Participants expressed that because of the availability of cash funds as part of the SDC intervention, they had the means to access more goods/services to achieve desired goals.	“I now crochet. I never would have had the money to buy materials before.”
	Access to non-traditional goods or services	Participants said that they had the ability to access options other than those traditionally offered because of the intervention.	“I can think outside the box in regards to what will make me more independent.”
	Knowledge and Information	Participants described learning more about goods/services available or being provided with information in order to make decisions about or access good/services.	“They gave me a list of places to go for activities and volunteering.”
Autonomy	Offered choices	Participants said that they had more choices because they were offered choices.	“Unlike the traditional care I used to receive they actually offered things to me, even if I didn’t take it.”
	Opportunities for autonomous decision-making	Participants indicated that they had the ability to make choices by themselves for themselves.	“I have a say in what I want to do in terms of services…”
Relatedness	Emotional support	Participants said that the recovery coach empathized, listened, or accompanied them to an activity in order to provide moral support.	“I have a person to talk to.” “I go to meetings with the recovery coach. I’m too scared doing this on my own.”
	Peer support	Participants commented about how they had greater choice because of the unique benefits of working with a recovery coach with lived experience of a mental health condition.	“[Recovery coach] knew a lot more resources than someone who wasn’t in recovery.”
Miscellaneous Support	NA	Participants described being supported to make choices, but did not specify how.	“They gave me support in ways other places didn’t…”

Note. Themes in this table were generated from participants who responded “yes” to the question “Do you feel like you have more choices about the services you receive for your mental health problems?”

Competence

Fourteen participants described factors that made them feel capable of affecting desired recovery outcomes. Two participants indicated that the ability to follow through on choices was made possible through access to financial resources, namely the cash funds provided as part of SDC. Similarly, participants (n=4) described having an ability to choose and access non-traditional goods and services that were consistent with their recovery goals (e.g., “[I had the] ability to take classes and go on trips that weren’t available to me before the program”). Finally, nine participants experienced competence through a growth in knowledge about their options or about how to access or use services. As one participant stated, “I found there are a lot of agencies and things available and I’ve learned how to benefit and take advantage of all of them.”

Autonomy

Seventeen participants provided statements consistent with the theme of autonomy. Many (n=10) expressed that they experienced greater choice simply because they were offered options. Some felt that they had “more options” because of their participation in SDC. Others commented on how the recovery coach made them aware of their options. Another group (n=10) described having opportunities for autonomous decision-making. These participants felt that they were in control of making choices for themselves. For example, “I can choose what I want to do [emphasis added by authors].” “…not them making the choice for me.” “I’m in control of the treatment I want. I have a choice.”

Relatedness

Seven participants indicated that relatedness was involved in their experience of greater choice. Two participants provided examples of how the recovery coach provided emotional support. Having a person “to talk to” and to “go to meetings with” were viewed as being important facilitators of choice. Five others noted that they experienced greater choice due to having a recovery coach who had lived experience of a mental health condition. One participant stated that the recovery coach shared about his/her personal experiences with medications, which impacted the participant’s choice about his/her own medication. Others felt that because the recovery coach had lived experience, s/he was more familiar with the available options than someone who was not in recovery, and consequently was able to offer them more options. Another participant said it was helpful to “know that there are others with the same problem coping with it.”

Miscellaneous Support

Nine participants made reference to miscellaneous support. “More of a connection to services,” “more support,” “explaining [things] to me in a way so I can make my own decision,” and “another opinion” were all examples of miscellaneous support.

Discussion

This study corroborates and extends findings from other research demonstrating a positive relationship between participation in SDC and outcomes related to choice and control (3, 29). The majority of participants reported experiencing greater choice as a result of participation in SDC. The present study also contributes to the small qualitative literature on SDC, especially by increasing understanding of how it facilitates choice from the perspective of people with serious mental illnesses. Finally, while previous research has used SDT to explain clinical outcomes (e.g., treatment engagement, quality of life) among people with serious mental illnesses (35, 36), to our knowledge, this is the first study to apply this framework to the experience of choice in this population. Participants’ statements indeed reflect how competence, autonomy, and relatedness were connected to their experience of increased choice, and indicate specific ways in which SDC addressed these needs.

Results suggest that competence may be addressed in part through the provision of instrumental support, such as financial resources, and facilitated access to desired services and supports. Although financial support would presumably be helpful to most people, it may especially be important for people with serious mental illnesses, who disproportionately experience financial concerns (37), economic and health disparities (38–40), and consequently, poor access to mental health care (41). Previous studies of SDC demonstrate that personal budgets are often used to meet basic needs (5, 6, 26, 42), which is seen as a prerequisite to making decisions about and pursuing recovery goals (26). Therefore, special funds as part of SDC not only provide the means to make necessary purchases, but empower people to consider higher-order needs and desires by enhancing feelings of capability to achieve desired outcomes.

Competence may also be promoted by empowering people through information about their options for mental health services and community-based supports. Participants’ perception that information facilitates choice aligns with discussions within the treatment decision-making literature. Addressing informational needs is imperative to facilitating treatment decision-making (43) and is a standard component of decision support tools (44, 45). A recent systematic review on barriers and facilitators to treatment decision-making capacity among individuals with psychosis found that capacity was significantly improved among individuals who received information repeatedly and in a simplified manner (46). Similar findings were reported in a study including individuals with bipolar disorder (47). Taken together, results from this study and other research suggest that mental health providers can especially enhance competence, and thereby facilitate self-determined choice, by providing information about options in way that is clear, memorable, and easy to understand.

Autonomy may be enhanced by offering people options about their services and supports and giving them opportunities to make decisions for themselves. Although research has suggested that the involvement of people with mental health conditions in making decisions about their care is an ethical imperative and improves treatment adherence and health outcomes (48), many mental health providers remain concerned about impaired decision-making capacity (49–51), rendering them less likely to share treatment options and decisions. Yet, autonomy is a basic psychological need (30), that, according to our qualitative investigation, is highly valued by individuals with serious mental illnesses. A number of strategies, such as patient and provider education, use of decision support tools, and supported decision making approaches, may be used to mitigate barriers to the involvement of people with mental illnesses in treatment decision-making (52, 53).

Finally, relatedness may be impacted by the working relationship between the recovery coach and SDC participant. Participants appreciated having a person to talk to about their experiences and recovery goals, and to accompany them to community spaces. They directly connected these relational elements of SDC to their experience of choice, further supporting the social process that is often involved in decision-making about mental health services (54). Further, this study suggests that having a peer deliver SDC may confer additional benefits. Participants felt that because the recovery coach also had lived experience of a mental health condition, he/she was able to provide them with practical information that assisted with decision-making, expand the options available to them, and connect with them in a way that supported their self-determination. These findings are consistent with research demonstrating a positive relationship between participation in peer-delivered interventions and self-determination (55) and involvement in decision-making (56, 57).

A few limitations to this study merit discussion. First, we did not collect qualitative data through in-depth interviews but via brief, open-ended questions related to different aspects of the SDC intervention. It is possible that we did not adequately capture the range of individuals’ viewpoints, ideas, and experiences. Second, we were unable to conduct member checking to ensure that we accurately recorded what participants reported. Thus, the comprehensiveness and validity of current findings should be assessed in future research. Third, while obtaining qualitative data on SDC from the perspective of key stakeholders is considered a strength, the subjective nature of the data precludes the ability to distinguish between actual versus perceived competency, autonomy, and relatedness. Simply perceiving that these needs have been met may facilitate choice; this is an inquiry for further study. Finally, we did not ask open-ended questions about choice to participants assigned to the control condition. Future research could examine and compare the degree to which competence, autonomy, and relatedness themes emerge and are related to the experience of choice in the context of other care models, or within particular patient populations (e.g., those with physical illnesses or diverse demographic or clinical characteristics).

Conclusions

SDC is an approach of great national interest that is person-centered and facilitates empowerment and self-determination. The present study suggests ways in which SDC may facilitate choice, but also illustrates how other interventions that seek to empower people with serious mental illnesses with making decisions about their care can do so through addressing the three psychological needs identified by SDT.

Highlights.

• The majority of adults with serious mental illnesses who participated in a self-directed care (SDC) intervention indicated that they experienced greater choice as a result of their participation.

• Their experience of choice was related to the fulfillment of three psychological needs (i.e., competence, autonomy, relatedness) identified by self-determination theory.

• The findings reported here suggest ways in which SDC may facilitate choice, but also illustrate how other interventions that seek to empower people with serious mental illnesses with making decisions about their care can do so through addressing these three psychological needs.